It’s been quite a while since I shared a health
update. This time around, no news is mostly good news!
Things have actually been relatively calm in recent
months. I had a bronch and a sweat test in July, but aside from those and bloodwork
every few weeks I’ve actually managed to avoid any other procedures. I haven’t
even had any doctor’s appointments! Katherine and I have been taking advantage of
the calm to go on outings and little day trips. We went out to a free concert
and fireworks for the 4th of July, visited the beautiful Chinese
Lantern Festival, drove to Edison for a cat expo, road a scenic railroad in Delaware,
went to Wildwood to check out a tattoo convention, and spent an afternoon at
the art museum. We’ve had a pretty busy summer, and still have more outings
planned! Definitely a nice change from medical drama!!
There is one big thing going on though:
Trikafta. I started taking it over a month ago, and it hasn’t gone entirely
smoothly. When I first tried it a couple years ago I ended up stopping because it
seemed to be making me fatigued and depressed. This time we tried increasing
the dose slowly to give me time to adjust, and while I did ok with the first dosage,
as soon as I moved up to the next level I started struggling with fatigue and
depression again. Right now I’m back to the lowest dose and planning to stay
here for a while to really give my body time to adjust before trying to go up
again. I don’t want to waste the rest of the good weather and spend the Jewish
holiday season being exhausted and depressed, so I won’t be changing the dose
until the end of October at the earliest. I do think I’m still having some side
effects, such as insomnia and fatigue, which is difficult but definitely much
more manageable than what I experienced at the higher dose. It’s really frustrating
that there’s this amazing medicine that could nearly “cure” my remaining CF
symptoms, but I may not be able to benefit from it due to side effects. I have
heard though that for some people the side effects fade after a month or 2, so
I’m hoping that eventually I’ll be able to sloooowly work my way up to a full
dose. Here’s hoping!
This month will be a little more medical, as I
have appointments coming up with my transplant team and my endocrinologist. I
also have a dexa scan scheduled to check my bone density, since my bones have
been compromised by years of steroids. But aside from that I plan to keep
getting out and about and enjoying myself as much as I can!
